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Everything will be okay in the end. If it's not okay, it's not the end. -Anonymous-----------------------------------------Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind -Dr. Seuss-----------------------------------------Somewhere over the rainbow way up high, there's a land that I heard of once in a lullaby.

Somewhere over the rainbow skies are blue. And the dreams that you dare to dream really do come true.

Someday I'll wish upon a star and wake up where the clouds are far behind me. Where troubles melt like lemon drops away above the chimney tops. That's where you'll find me.

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Share of Madison, WI Support Group

The Share of Madison support group meets the fourth Wednesday of every month, usually at the Alisha Ashman Library branch in West Madison. We meet from 6:30-8:30 p.m. Please contact me directly if you are interested in attending.

Sunday, October 25, 2009

My specialist recommended an endometrial biopsy. I took several weeks to think about this decision. This doctor has researched recurrent pregnancy loss (RPL) for decades and knows her stuff. I believed her when she told me this would help us understand if I have a luteal phase defect (one cause being failure of the uterine lining to respond to normal levels of progesterone). This decision rattled around in my brain for days and days. I talked to a friend who had the procedure recently. It was painful. The results were confusing to understand (at least, without a doctor's interpretation - which, frankly, may not be more clarifying). This friend still felt pain from the spot where the tissue was cut out of her uterus. I talked to my new OB. She recommended not having the procedure exactly for the reasons I feared - the pain, the inconclusive results. She simply handed me a prescription for the treatment - synthetic progesterone. I thought about how many procedures I have had over the six years I've spent trying to have children. All the doctors (some known, others strangers), exam rooms, the time off work, the pain medication, the time spent curled up in pain that medication can't heal.

The answer came to me easily one day. I can't do it. I refuse. I will not have this procedure. The trauma to my body and my psyche is too much. I'll take the progesterone, absent the proof of need. I'll face the specialist to tell her I won't do this thing she thinks I should do. I'll do what I feel is in my best interest, despite the rational argument that taking medication is a risk, should be dosed properly, and may not help. Because thinking about the alternative - the PROCEDURE - is more than I can bear.

One of the frustrating things about RPL (there are many) is the unknown. The body's ability to create life is still a mystery, especially when it isn't successful. Some doctors are willing to test, others aren't. Some give out medications without proof, relying on the concept of Tender Loving Care, which is big in the reproductive medical community. It translates into "give the woman whatever she wants when she wants it - ultrasounds, beta HCG test, medication that may or may not help." Show compassion, listen to her, answer her questions. Giving us something to feel like we are DOING SOMETHING is supposed to help alleviate the fear and anxiety that comes with being pregnant when you've had RPL. Unfortunately, the tests are usually inconclusive and often lead to more tests. All of this means more crap we have to do. We submit to blood tests, painful procedures, talking to insurance reps who think RPL is the same thing as infertility and infertility isn't considered a medical condition, scheduling appointments, praying for approved referrals, waiting for nurses to call, not getting to talk to our doctors, taking medication.

The unfairness of it all is something I have to live with. Seeing someone effortlessly carrying a baby to term, complaining about morning sickness, whining about feeling uncomfortable. I have to remind myself that she just doesn't understand, that she doesn't live with my reality, that she has her own problems. My father always told me that life isn't fair. I remind myself that I have a bright and healthy child, an amazing husband, a loving family, a network of good friends, and work that I enjoy. Thinking about these things helps me keep this unfairness in check.

5
comments:

And I've had that biopsy done and yes...PAINFUL. If I ever have to have it done again I'll be under anesthesia. I literally screamed and then immediately cried during the procedure. I'm glad you have decided not to do it. I know I'm not a doctor, but I had this test done for cancer reasons, so I guess I don't see what gains would be made in RPL for this test.

I'm with you on your decision to not get the biopsy. I read A LOT about RPL and that test is not very conclusive. You're better to just take the Progesterone. My cousin is an OBGYN and she assures me, as does my specialist & family doctor that you're not doing yourself any harm by taking Progesterone if you don't need it. But as someone who reads a lot about RPL Progesterone treatment is not widely recognized. For every doctor you find who thinks it works, you'll find another doctor who thinks it doesn't. You just have to do what you're comfortable with. Although Progesterone hasn't been successful for me yet, I'm going to continue to use it.

I've already had as many procedures without anaesthetic that should be anaesthetized as I am interested in having for life. So more power to you. I doubt the extra progesterone will hurt you, and that test really could - not only pain-wise, but how do you know what it will do to your health, having part of your endometrium cut out? I've had doctors swear up and down to me that my SHG and HSG didn't kill my CM, but I know how it was before and after. There's no medical data that that can happen because when they are presented with data, they DENY it. You have to protect yourself.

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My story

My name is Cynthia, and my journey to motherhood has included seven miscarriages. My husband and I chose to wait until we had been married for five years before we decided to have kids. We survived three miscarriages in fifteen months. My potholes. When our son was two years old, we tried for another child. We had four more miscarriages.

This site is "My Yellow Brick Road Has Potholes" because I feel a little like Dorothy. She knows where she wants to go and wants to get there so badly, but there are troubles along the way. I have stumbled, fallen, and gotten bruised along the way. Nobody told Dorothy the journey would be so painful. Fortunately, she has the support of kind and able loved ones. Along with hope and a strong spirit, she made it to Oz and then back home. With loved ones along the way, the journey is bearable. You may feel shock, sadness, bewilderment, rage, jealousy, or a number of other emotions. Your journey may not be what you thought it was going to be or even should be. I encourage you to put on your ruby red slippers, close your eyes, breathe, and allow yourself to hope. Your dreams can come true.